Thursday, January 04, 2007

So I said I'd post about the week of appointments Q had while the kids were away. . .

That Monday morning, in our usual OT slot, he was practically inconsolable. Not his usual self. The OT (truly lovely, she is) and I both thought is was a combo of too many changes (prolonged power outage had displaced us, kids were gone, "visitation" was more stressful than it had to be) and perhaps a virus. He later developed only minor sniffles and a very light cough that lasted only hours. His nervous system is more profoundly affected by bugs, but this did seem like it would have to be a combination of all the above, which makes me seriously wonder about those circumstances which can be controlled and the wisdom of, well, never mind.

That afternoon, I'd scheduled a last minute visit with the pediatrician (we were supposed to have been on the road to CA by then, remember). We discussed the probable need for other interventions and/or consults with other specialists (ENT, GI) and at what point one would decide to go ahead with such a thing. I told her that I'd been reading exchanges between parents of kids with PMG, that it's likely going to describe what's up with Q's brain, and that there seem to be some behavioral similarities. Like: sleeplessness, oral/facial musculature issues (differing depending on the sub category of diagnosis), kids "sounding snuffly at night" even when they're clearly not ill. We brainstormed a bit about that and addressed Q's meltdown from earlier in the day. She's an absolutely awesome pediatrician. She isn't afraid to acknowledge that, with Q's issues, she'll probably never see another kid remotely like this. In fact, she brought it up. Then we talked about the ways in which to track down specialists that might have ever in their long careers run across PMG (very unlikely). She addressed the other issues which might be stressing Q and will be invaluable in that department as well.

Q had speech therapy Tuesday afternoon and was no where near melting down at that point (being back home with the power on had to have helped some). His ST is great, always pushes him a little more than I would, which is probably fine, even if it does make me cringe a little. Sometimes being the mama sucks.

Wednesday I drove to the children's hospital to have Q's blood drawn. I got to argue with the lab people about whether or not the emla cream (numbing cream--it's now called something else and works in 15 minutes instead of 30--thank God for small miracles) would be "worth it" since they'd have to "hold him down anyway."

For those of you who may not know this about me, a brief heads up. I will roll over like a puppy lookin' for a good belly rub for people who are nice, even if we won't ever see eye to eye, but mess with me, be rude to me, or step over the line where my babies are concerned, and I become the definition of "heels dug in." If you tick me off, you'll be lucky if I've had enough sleep to be polite in my firm response. If you push me further, you will probably remember me for a very long time. Yeah.

Lucky for the lab secretary, I'd had some sleep. I told her (and the large cranky phlebotomist standing behind her) that emla had worked very well for him the last time we had to do this, so well that he didn't need holding down, just steadying, and how did I go about getting it, smile, blink blink, thankyouverymuch? Turns out one needs a prescription (gah) so we had to chase down the geneticist's assistant (who wasn't supposed to be in the hospital that day, but was, again with the small miracles) and I grabbed a sandwich while I waited for her. She's awfully nice. We got that cream right on there. (If you ever have to do this with your kid, make sure it's applied ~1/3 on the distal/hand side of the elbow crease, 2/3 on the proximal/shoulder side so when the needle goes in and up the vein, they are still numb. Yup. You're welcome.) She had someone with her doing training for this, which I never mind unless they mess up with the above stated issues, and we chatted about the same basic stuff I'd covered with the pediatrician. She reminded me that the anecdotal stuff is interesting and all anyone really has to go on at this point, but the really useful information will come out of the meta-analysis of the study Q is now a part of. It was totally Providence that we met up: I had thought I'd returned a signed consent form for that study months ago, but they didn't have it and were planning to contact me that afternoon to inquire about it. I signed it while we waited for the cream to kick in and then headed back to the lab.

When I arrived there, the large cranky phlebotomist waved me off to someone else, no doubt assuming that I'd be no fun in the room. (Imagine.) The very nice guy who walked us back and did the blood draw, who I swear I've never seen before, went on and on in baby babbles to Q about how big he'd gotten since the last time we were there. ? I decided to overlook this oddity in the hopes that it meant nothing for how good he was at his job. It went very well. He got it on the first stick and had the foresight to use a syringe for the 5ml needed instead of just a tube so Q wouldn't clot so quickly that he'd have to get stuck again--happened last time. Another hot tip: ask for the butterfly needle. I don't know why, but it hurts a lot less (personal experience here) than the "regular" one, which is always good.

Thursday we saw the neurologist (scheduled months ago--I'd forgotten to cancel the appointment). Q was pretty much back to his regular self by then. Dr. V came in speaking Donald Duck to Q, who had been just about to fuss a little, wanting entertainment . Q froze. Dr. V paused. More Donald Duck. Q oriented to the voice, broke out into a big grin, said "nGoo," and dropped his eyes, ducked his head (reorganizing his brain in the presence of overstimulation). We all laughed a little. And the neurologist said, as he sat down: "Well, he's clearly happy to be here."

And he is. Parents who've survived colic may recognize the significance of that statement somewhat more easily than the rest of the general public. Having done so myself, I have since been profoundly grateful for happy babies, my own and all others--really. I do thank God for this. But with Q, it's more than that. His wiring doesn't allow for things to be easy. If there's something going on with him, it will more likely than not be quite complicated, require loss of sleep on my part, some unlabelable fussing on his part, and it's all hard--learning Q is like learning to be human all over again. All the definitions are different. And just enough different to keep me feeling sort of half a tick off. As if I keep waking up in a Twilight Zone version of Groundhog's Day (not that either isn't weird enough on it's own).

So the fact that he's happy to be here, and he really, truly is, is a living manifestation of God's grace. I am on-my-face grateful for that every single day. This could be so much worse. Imagine a baby in pain, with no way to work out what's wrong. Perhaps the crummy wiring thing just reversed enough white and grey matter to keep them constantly sad. I think I would want to throw myself in front of a train. What worse hell for a parent? To have a child whose needs cannot be met. To want to, to need to make it better and not be able to. I am blessed in this: Q is happy to be here.

I asked the neurologist about terms. As I've been reading about kids with PMG, I've noticed that there's often a trailing list of other diagnoses. He confirmed that because Q has had seizures (though the Trileptal is working beautifully and his sodium levels are good--yay!), we will say that he has epilepsy. He confirmed that Cerebral Palsy is a useful term for Q, but more because people look at you like you have three heads and are sprouting a fourth when you tell them that he has partial Lissencephaly or Polymicrogyria. When you consider the relatively small number of people diagnosed with this kind of brain malformation, it's hard to blame even the relative experts for having that look of "Lissen-what?"

That's about it, I guess. We head back to the neuro office in March, anticipating an adjustment in meds. I need to get another vision therapy appointment set up.

Oh yeah: Q started solids yesterday. Breastmilk and organic rice cereal. So far, so good. No aspirating, no reaction to the food, and only a little spoon biting. Hip, hip hooray!

First time here?

Me

I'm mothering five gorgeous, perfect children, and homeschooling three of them. I am one of the best-blessed mamas in the universe. Oh and -- there's the small matter of neuro issues here. I suspect that somehow the littlest one's Special Needs behave as some sort of condenser that delivers unusual configurations of Rainbows, Butterflies and Bliss, right in the midst of the ubiquitous and itinerant crazy bits. So we have some stories to tell.